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Blueberries versus Mandarins

I knew it was coming. I was prepared for the ocean of calmness we were in to come crashing down with the giant wave of a PWS moment. 



Did I expect it that Monday? Not one bit. In all honesty, I’m not sure I ever expect it and my heart skips a beat when I get ‘the call’.

Flight or fight mode kicks in. For me, it’s flight mode. I’ll take The Lodger home, wait until the PWS moment has passed, and we’ll talk things through quietly and calmly. Just once. We don’t dwell on it. A consequence is put in place and we move on. 

We’re not used to meltdowns at home. So when they happen out in the world, I feel completely out of my depth. 

I’m unpractised at this. I feel like a rookie. I try to remember everything I’ve read on how to handle a meltdown. Keep a calm voice tone, use positive language, don’t use too many words, don’t interrogate at the moment and keep breathing. 

All easier said than done. 

I read a book a while ago and I’ve reread it several times since. 
It’s called‘ Not what I expected by Rita Eichenstein’

I wish I had read it sooner. I nodded along throughout this book and found it comforting to know that raising an atypical child is the same for other parents who are raising an atypical child. 

In those meltdown moments, when I’m holding together for The Lodger, helping him get through it, I’m not alone in feeling completely overwhelmed. 

When The Lodger has a bad day, the analyst comes out in me. I can’t help it. I try to problem solve the impossible. 

What happened today to cause the blip?
Have we been doing enough exercise?
Enough sensory play?
Did he watch too much Tv over the weekend?
Could he have overheard something he shouldn’t have?
Did a routine change?
Did something unexpected happen?
Did something not happen?
What has he eaten today? 
Did I tell him an incentive for having a good day?
Is he getting sick? 
Has he had any medicine?
If so, What are the side-effects
Did he walk and talk today?
Is he anxious over something?
Has he been doing enough playing?
Did he have a good nights sleep?
Did he wake too early?
Did he have naps at the weekend?
Is he getting hungrier?

Everything. I’ll analyse everything. I’m not alone, my husband is also thinking all the same thoughts, though he usually doesn’t hit the levels of mandarins versus blueberries. 

I was down to the nitty-gritty, scraping the last possibility of why The Lodger had a bad day.

‘I’ve got it’ I texted my husband.
‘He had a mandarin that day and not blueberries. I’ve been reading through the communication copy and on blueberry days he has more energy. Maybe he was just wrecked, lack of energy. What do you think??’.

I have, however, since been disproven on my blueberries versus mandarin theory. So it’s back to the drawing board on that one. 

So we increase the exercise, the sensory play, we cut back on his already small allowance of TV watching. We’ve noticed over the years, that TV watching and The Lodger don’t mix well. The longer he is allowed to watch TV, the more lethargic he becomes, it’s hard to get him willingly to do anything. Unfortunately, The Lodger loves TV, so TV terms have been negotiated. The Lodger has accepted it that TV is for set times at the weekend to stop his brain from getting mushy. We call it zombie brain.

Do we ever find out the reason for The Bad Day?
Rarely.

On a bad day, The Lodger is physically and mentally exhausted. Towards the end of the meltdown, he’ll cry, a whole body cry and then sleep, a really deep sleep. He’ll wake up, we’ll talk, we’ll try to figure it out, the occasional time we do but mostly we don’t. 
That’s the way it can be with PWS.

We've learned from other parents, from PWS experts, that a meltdown can be over the smallest, tiniest,  most insignificant thing. Something that might not even fully register with The Lodger but it builds and builds and then like a wave, CRASH.

We’ll start a new day. He’ll be back to himself and we’ll be back in the ocean of calmness waiting for that next wave to hit us and it will. It will hit us, probably when we don’t expect it to but like everything in our world with PWS, it’s something we are getting used to. 



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